After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.
I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to!
After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.
Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?
I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover I really don't want to suffer like that for 6 weeks!
I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity.
In the U.S., this is still not a formally recognized diagnosis, although it's gaining a lot of traction in the established medical community. My primary care doctor is aware of it, and many of her patients are gluten free.
I've since found out that I have gluten sensitivity on both sides of the family, including tendencies towards alcoholism, depression, and Alzheimer's.
Probably the most direct evidence of gluten sensitivity is my brother, who tested positive for Ankylosing Spondylitis, and is now eating primal to get the inflammation down. I'm convinced I have it too, and have triggered a flare by going back on gluten for testing. Both my shoulders, my lower back, and my hip are stiff and sore to the point of not getting restful sleep at night. I'm going to see a rheumatologist next week to confirm the diagnosis, which is actually more of a diagnosis of elimination.
I'm glad I got my diagnosis though, because I feel I can help contribute to the research surrounding gluten sensitivity. Understanding this disorder, or disease process, is still in it's infancy. I'd say getting tested depends on your need to know, as well as the potential value you see a diagnosis adding to your life.